Rica Lode’s Personal Experience with PGD (Part 5)

This is a multi-part series featuring Rica Lode’s search for preimplantation genetic diagnosis. Rica continues her search this week and talks about the online communities where she’s found information and support. To start at beginning of Rica’s story in her own words, here are part 1, part 2, part 3, and part 4. Also don’t forget to vote in our PGD poll that’s to your right in the sidebar.

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I feel as if I’m hitting a wall here and there. Although I may have an upbeat attitude most of the time, but occasionally frustration can get the better of me. My husband need to get a genetic testing done, which we are not certain yet whether it is available in Malaysia. I discovered there are two pathology centres in Malaysia, who are affiliated with other countries. However, both of them could not verify with me yet whether it can be done where Neurofibromatosis (NF) is concerned. In fact, they have not heard of NF before. I would need to get back to them later on this when the person in charge is available.

At the same time, one of the centre’s website mentioned that they do not cater to individual requests but only from medical practitioners and hospitals. That means we would need to get our doctor involved. The average duration of a report to be made available, as claimed by one doctor, is either six weeks’ time (at its minimum) or as long as three months. At the same time, we would need to get a written medical report from my husband’s doctor. Although the physical examination, eye slit lamp examination and head scan confirmed that he is of NF Type I, but this information was relayed to us verbally.

By now, I’ve been getting some email responses from Australia, Thailand, US, UK, and even Singapore. I still do not receive any response from Taiwan nor Japan yet. Most of the responses, are positive ie they do provide PGD as a service at their hospitals. Remember I mentioned in one of the earlier posts that PGD was not available in Singapore, as replied by one Singaporean hospital? Singapore is suddenly now back on the shortlist.

I came across this article entitled “More couples seeking pre-implantation genetic diagnosis ” in Channel News Asia’s website that suggests to me that PGD may be available in Singapore after all. It was this particular line that caught my eye:

Last year, the Bio Ethics Advisory Committee came out with its report on Genetic Testing and Genetic Research which the government has accepted.

The Health Ministry says that it is only allowing PGD for serious genetic conditions and not for non-medical reasons like gender selection.

One professor was being interviewed in respect of PGD. Based on the report, I did the next thing which any person would do – to ‘Google’ him in order to look for his email address. I inquired from him whether PGD is available in Singapore, to which he confirmed with me that it is but they would need to get approval from the Ministry of Health. However, he could not confirm with me yet whether they could screen for NF1. I am still awaiting for his confirmation at the time of writing this. For now, we would try to find a place to do genetic testing in Malaysia, if this is available, or elsewhere while assessing which countries are viable to us to perform IVF-PGD.

Along the way, I discovered there are online support groups for those undergoing IVF-PGD or IVF alone. One is known as IVF Connections Bulletin Board and PGD Patients Group. You would need to register yourself before you can access to these bulletin boards. I find IVF Connections to be invaluable as the subjects are wider; it has a PGD as a topic by itself under sub forum, “Special IVF Procedures/Protocols.” They even have a sub forum topic for men only to discuss on IVF; IVF by location; IVF by age group and many more. I noticed the support group proved to be useful in obtaining information on IVF-PGD especially for the first timers. If you have been looking for an online support group for IVF/PGD especially in your home country, check out IVF Connections.

Rica’s story continues with Part 6.

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